Hi, my name is Amanda I was diagnosed last year with hypermobile Ehlers-Danlos syndrome (hEDS).
For 10 years I was looking for answers and trying to figure out why I was having so much pain, what was wrong with me, and why typical things that work for others weren’t working for me.
I had signs as a child that I look back on now, but my chronic pain and more issues started after having kids 12 years ago and have continued.
In addition to hEDS, I have also been diagnosed with POTS/Dysautonomia and several other conditions and have seen about 14 specialists.
I have arthritis in my spine and issues at my C1 C2 and a pannus that is attached to my C1. I also deal with chronic and very severe migraines called chronic intractable migraines with status migrainous and TACs (Trigeminal Autonomic Cephalgias) which cause the left side of my face to droop and tear from the eye and one nostril. I basically have permanent head pain and they will get so bad I end up in the ER, they’re definitely not typical headaches.
I also deal with chronic GI issues and had gone through malnutrition and extreme sudden weight loss. I also had the removal of my gallbladder due to chronic cholecystitis with cholesterolosis. So far I have issues in my spine, head, elbows/arms, GI tract, eyes, bladder, and heart.
Having POTS has been a struggle too. Before knowing I had it, I was in the ER constantly with a rapid heart rate and crazy symptoms.
On one of the ER trips they told me after I left that I had a heart attack. A day later I was hospitalized and at first, was in the resuscitation room and that was the scariest time of my life. I thought I was going to die.
I have been trying to manage my POTS with medication, salt tablets, and compression tights for my stomach. Even with all that my blood pressure gets in the low 80s and the constant dizziness and the chronic fatigue that comes with all this is no joke either.
To me or for me having EDS is a life of pain. Every day I get up and try and push forward and do the best I can and stay positive as much as possible, which isn’t always easy, and just try and live my life, I deserve to have a life! We zebras really are warriors!